There is a "too long, didn't read" version at the end. So my problem is the same as last year: I wanted to write an article for ME Awareness Day based on how pwME in Hungary are affected by the disease, how healthcare, social services etc treat them, how this affects their family and social life and so on. But just like last year, people really liked the idea but no one wanted to actually share their own personal experiences. There is a lot of general apathy here about advocacy projects (and the same is true for long covid - they have absolutely zero advocacy). Last year luckily a journalist did an interview with me about the disease for ME Awareness Day and I hoped that it may give motivation to some people but unfortunately it didn't. But I still would like to have a special article for ME Awareness Day and I thought maybe you could help me. I thought I would just turn the whole idea around and instead of trying to make them speak, I would ask the members of S4ME to send a few words to them. It can be literally anything, from something about having to deal with the disease to what you think the future for ME/CFS will look like to your personal experience or talking about how much BPSers and PACE hurt the situation of the disease. Or just a few encouraging words. Or how much you are looking forward to DecodeME. Really, anything. Many of my group members speak English but many don't. Many are not really aware of the situation of ME/CFS abroad, that there are actual patient organizations and many advocates fighting for the disease, that you can find doctors/researchers who not only believe you but even understand what the hell you are talking about. I know that even abroad these things are rare, but here in Hungary, this sounds like pure science fiction. Also, due to the total absence of medicine in this subject here, many patients are deeply buried in alternative medicine and have lost their trust not only in healthcare, but due to all the BPS stuff, also in research. Some people have read a lot in English about it but many know very little about the disease due to their lack of English and only know about these things because I write about them. And I think it would also be great for them to actually hear something that is personally sent to them, coming from people where advocacy is much stronger and some things actually happen or where there are people who are not shy to talk about the disease. TLDR - I need short (a couple of sentences at most) messages from you that I'll post in an article to Hungarian patients on ME Awareness Day - topics: anything - your personal experiences, encouraging words, advocacy, science, whatever you think would be important - please state what information I can add about you - for example: full or given name or anonymous, gender, country, severity level, whether you are a patient or an advocate etc - you choose which one you would like to share and it is perfectly fine if you don't want to Thank you!